April is Parkinson’s Awareness Month
I am 53 years old and was diagnosed with Parkinson’s disease at the age of 23. I have made it my mission to provide Parkinson’s awareness through my 12 year old award winning blog, www.asoftvoice.com by sharing lessons and information related to this illness.
Thirty plus years with Parkinson’s has taught me a great deal about living well with this chronic condition.
Here are 10 things I want to share with you about Parkinson’s disease:
- No two people with Parkinson’s are identical. Every patient is unique and may require a personalized treatment plan.
- Often, the first symptoms of Parkinson’s can be a loss of sense of smell, constipation, or wrist or shoulder discomfort.
- Tremor, mobility issues, and facial masking are probably the symptoms that are most identified with Parkinson’s. It is believed that symptoms may begin 10 or more years before visible symptoms might be recognized.
- Some people with Parkinson’s disease may show no external symptoms but can have difficulty with memory and other cognitive issues, digestion, pain, eye problems, or depression.
- A positive perspective, a good attitude, staying flexible, and a sense of humor can help to deal with stress and anxiety.
- Embracing exercise (Rock Steady Boxing), speech therapy (SPEAK OUT!), yoga, reflexology, reiki, meditation, massage, can help to reduce anxiety and stress to calm both mind and body. Don’t stop looking for a combination of therapies that work best for you!
- Parkinson’s disease is not an old person’s disease. I have had Parkinson’s for several years prior to my diagnosis and that was over 30 years ago.
- Dyskinesia (rapid, uncontrolled movement) is not due to Parkinson’s disease itself, but it is a side-effect of the medications.
- Protein can reduce the efficacy of some Parkinson’s medications. Consult your doctor for more information.
- Find a neurologist who is a Movement Disorder Specialist (MDS). They have specialized training in Parkinson’s disease.
I’ve found that by staying active and taking a proactive approach to my Parkinson’s, I’ve been able to live well, pursue my writing career and published two books, lecture, travel extensively, and continue my passion for photography. A diagnosis of Parkinson’s has not been the end for me but given me a new purpose and a new direction for my life.
Change to the highest degree is here with rampant speed. It’s a new normal for us all. Social interaction and daily life as we know it will most likely change, forever. Change can be uncomfortable and difficult to accept. Only time will tell what our new normal is going to look like.
Be Careful-Be Smart
As COVID-19 makes its way around the world, it is up to us to remain vigilant as we look after ourselves, our loved ones, our neighbors, and everyone on the planet. It is terribly ironic that a pandemic can confine us to our homes, but highlights just how connected we are to one another. Rich or poor, whatever your race, gender or nationality, we are all in this together.
It is my hope that we choose to share compassion and kindness, in this time of need. This is our opportunity to reunify our nations and the entire planet. Whether you choose to deny climate change or think the Earth is flat, there is no denying this virus and the havoc that it is causing.
Those of us with Parkinson’s disease may face an even higher risk than the rest of the population, so be extra cautious in your cleanliness, daily care, and exposure. Educate yourself with these important sites, in case you need more information about protection and care:
Virginia Department of Health – COVID-19
Centers for Disease Control (CDC) – Coronavirus (COVID-19)
World Health Organization (WHO) – Coronavirus disease
15 Ways to Improve the Lock-down
Music feeds my soul and if I miss a day of my music, the day just isn’t complete! Enjoy some type of music that connects with you! Whether the music moves your spirit, your energy, or your mood, play something that moves you.
Reality TV is as close as your nearest window. Too often, we overlook the inspiration of nature that surround us. It may be a brilliant sunrise, a running squirrel, or your neighbors’ dog. Appreciate the simple beauty of the day around you.
Discover a new talent on YouTube. Whether you want to learn to sharpen your knives or learn to juggle or dance, you’ll find it there.
Hone and expand your creativity by drawing, doodling, painting, writing, cooking, or learn a new language or musical instrument.
Forgive me. They are called books. They are low-tech but they still have a place.
Stay active and force yourself to keep active.
For stress reduction, try to meditate and check out the App called, Headspace. This is the one that I use and enjoy!
Use your technology to keep connected with family and friends.
Build a new daily routine.
Take special care of your animals. Don’t forget them!
Look after your neighbors.
Be kind, compassionate, and patient.
Don’t forget how to laugh.
I plan to organize my old photos and find a way to use them.
Streaming services like Netflix have great content for the whole family.
These are just a few suggestions to inspire moving ahead in this trying time. Be safe and take of yourself and anyone else that you can!
I hope these suggestions are helpful. My intent is to offer some positive thought.
I didn’t see it coming and the shock that I feel is one full of confusion and sadness. Saturday night, our 11-year-old Chocolate Labrador, Lily, jumped off the couch for her late walk, but her eyes were unclear, her head was unsteady, and her breathing seemed shallow. We think she may have experienced a seizure. When your chronically hungry lab turns down an offering of a treat or a hunk of cheese, your warning sign has been activated. Lily was a canine vacuum, so when she turned down anything close to being edible, there is an emergency pending.
Thinking that you are flexible and easy-going can be dramatically different until, you are challenged. Life has a way of sneaking in unexpected setbacks that knock your feet out from under you. We recently experienced the challenge after picking up the flu, following almost a month-long trek through the southeast. This strain of the flu knocked us on our butts, hard. It lasted far longer than we had expected. Our loyal lab, Lily, helped us mend and kept us company, the whole time. She was our nurse and companion through the coughing fits. She wanted to make everything okay. She was selfless!
Angela and I were in crisis mode. We rushed Lily to the 24-hour emergency veterinary clinic. It was early on Sunday morning. Tired and scared is a bad combination, especially when you are worried about the fate of someone you love.
Lily was an exceptional dog, with great intelligence, and a stubbornness for chewing sticks and sometimes eating them. We just assumed that a stick had lodged somewhere, causing her discomfort or a blockage of some kind. Other than this new development, Lily had shown excellent health and vigor for a dog of her age. She looked spry and active and never missed a meal or a treat.
Lily was a sensitive and caring dog. At first encounter when you met Lily you would see her lip raise and her teeth would come out—some saw a snarl, but if you knew her and her nature, you saw her smile. She greeted everyone with her welcoming smile. Her smile brought so much joy to so many, especially us.
It was close to midnight on Sunday morning at the emergency vet, when Lily tried to smile at her doctor but was only able to make a partial lip raise. She really tried. Her tail wagged and she searched for a greeting, but the energy just wasn’t there.
Our emergency vet was a young man in his early thirties. He was a very gentle and accommodating doctor who bonded immediately with the ailing Lily and her anxious parents. We explained our situation to the doctor. He told us he would scan Lily to check her insides for any possible cause for her discomfort.
Ten minutes after he had left the room, he returned with devastating news that she was bleeding in her heart due to a cancerous tumor. Her options were not fair to her and we were left with no choice but to give her a peaceful sendoff. We would not be taking her home again. It happened so fast and at around 1:00 AM in the morning.
Trying to comprehend the situation and the sheer rapid pace of information and decisions that were being flung our way took all our concentration and strength. Our energy was drained, and our emotions were overwhelmed. We were not prepared for what the universe was doing to Lily and us and the speed with which it was happening. Lily was gone by 4:15 AM. All that I can say is it was a peaceful death. She didn’t suffer.
Dealing with the death of those who are close to us doesn’t get any easier with age. We are still in shock. The pain may dissipate over time, but it will never go away entirely. There are at least half a dozen places in the world that I don’t want to go– one of the top places is the emergency vet in the very early morning /late night hours, or at all.
We are so grateful for the emergency vets’ efficiency, compassion, patience, and kindness. He made a very tough situation much easier when it could have been even more difficult. As hard as losing Lily has been, we see a positive in the wonderful care that she received and the tenderness that we all were shown. There was no way to prepare for this shocking experience but together we will support each other to get through this difficult time.
We miss her so much!
If you are wondering where I have been or why ASoftVoice.com has had a month of dormancy, I can explain. I am finally capable of telling you just where I have been and the mystery, behind it. The mystery is not nearly as thrilling as this build-up, but it’s fun to write something different for a change. Writing a mystery has some appeal but this is neither the time nor place. I am happy to report that my tale is one of travel. Not too salacious, not too violent, but it does explain my absence.
I am back, after taking almost a month-long adventure-road trip to Key West and back to Northern Virginia. For about 3 weeks, Angela, Lily, the Chocolate Lab, and I explored the Southeast coast and sucked up the warm breezes, compelling sunsets, and miles of open road. Ripe with photo opportunities, my cameras were consistently clicking. Above is a sample and collage of just a few of the pictures that will be in my new gallery, on the website.
Unfortunately, somewhere along the way, we picked up a souvenir, called Flu-don’t pick it up. It is very unfriendly and may cause you to stop off at the Emergency Room on a Saturday morning. I did. A bad cough, a fever of 103.7, and body aches made for a hard-hitting attack. Slowly, I am on my way back and am feeling human, again.
The trip was great! Getting ill has been a setback, but I’m making my way back! Please subscribe, so you never miss the latest post.
For the first 7 years of being diagnosed with Parkinson’s disease, I didn’t see a need, nor did I have a strong desire to join a Parkinson’s disease support group. When I moved to the suburbs, my neurologist, at the time, encouraged me to see what support groups could offer. After attending meetings of a few support groups, my wife, Angela, and I envisioned what we wanted in a group. In a very short period, I went from avoiding Parkinson’s support groups to speaking at them and even starting one of my own. My wife and I ran our support group for a dozen years. I learned so much from so many amazing people. As much as I thought that I didn’t need a support group, it turned out, that I really did.
The reality is that a well-run support group offers camaraderie, information, and a wisdom that comes from so many, all in one place. A support group can show you what is working and what to avoid, doctor information and feedback, available classes that pertain to Parkinson’s, local therapists, caregiver support, Parkinson’s news, and speakers in your area. When you find a good group, it feels like another family and a place that you belong. A strong network of family and friends is crucial to your health and wellness, no matter what the illness.
Some support groups may not match your personality or may not be the kind of group that you feel comfortable with, right now. I wanted a group that focused on the sharing of information and left me more empowered than when I came in. We made a lot of friends, shared both the good times and the rocky times, and provided one-another moral support. Despite our age differences and unique situations, we all learned together and bonded together into a cohesive unit for most of the group’s longevity.
We Are All In This Together
Knowing that you aren’t alone, is so important. Something as small as telling someone that you are thinking of them or that they matter to you can save another’s life. Knowing that people are thinking about you and caring about you is so empowering. Just a simple quick text, an email, a phone call, or a good old-fashioned greeting card can make a huge impact.
Care-giving has its stressful moments. We all need a break. Taking time for ourselves is not selfish-it’s a precious necessity. Your self-care makes you a healthier more helpful contributor.
Helping Ourselves Helps Those Close To Us
Patient or caregiver, there is no shame in admitting that you need help. It takes a strong person to go outside his or her comfort zone. Tell someone close to you what you are feeling and to let them find assistance for you.
I am not an expert on mental health nor am I a doctor. This is not medical advice; it is only what I have seen for over the 30 plus years of having Parkinson’s disease. I have observed friends struggle, who may have benefited from this kind of help. If you see a friend in need, reach out and offer that help. You may be saving a life.
National Suicide Prevention Lifeline is 800-273-8255 or 988 in the USA. Go to https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines for an international list of hotlines.